Judge: Cobb J
Citation:  EWCOP 46
RR was a 20 year old man who had been afflicted by aplastic anaemia for five years, and treatment, including a bone marrow transplant, had not been successful – partly due to RR not following the recommended care and treatment plan. The Trust applied to the court for a declaration that RR lacked capacity to make decisions about palliative care provision, and to approve a palliative care plan for him. At the time of the court hearing, RR was thought likely to die within days or weeks. The basis for the application was that the Trust did not consider it was in RR’s best interests for a further bone marrow transplant to be attempted primarily on the basis that he would not comply with the treatment plan, and as RR was thought to lack capacity to make relevant decisions for himself, the Trust wanted a court to confirm that its decision was correct.
RR was said to have been diagnosed with a range of conditions – autism, Asperger’s syndrome, dyspraxia and traits of an emotionally unstable personality disorder. He had been subjected to significant harm while in the care of his birth parents as a young child, prior to being adopted at the age of 7 or 8. The court found that he lacked capacity to make decisions about his medical care, noting that the issue of his capacity had only been raised within recent days or weeks, as it became apparent that RR was nearing the end of his life. Cobb J relied in particular on an assessment by a court-appointed independent psychiatrist, who concluded that RR did meet the diagnostic criteria in s.2 MCA 2005 due to “major problems of emotional dysregulation due to childhood trauma, compounded by Asperger’s syndrome”. This made it difficult for RR to weigh information and communicate a decision, as his poor ability to manage his emotions, his maladaptive coping strategies and his inability to think about aspects of the past would prevent him from reflecting on aspects of his treatment that cause him particular distress. In particular, he could take into account information about the previous failed bone marrow transplant. However, Cobb J noted that it had not been an easy decision, not least as there was evidence of RR apparently making informed and reasoned decisions previously, and since the fear and anxiety about his state of ill health might have affected his decision-making irrespective of his mental disorder.
Cobb J approved the palliative care plan, noting that there was no real prospect of a second bone marrow transplant, in view of the recent deterioration in his health, the standard risks accompanying that treatment and the low prospect of success generally (around 1%), and the need for RR to remain in isolation for 4 weeks after the transplant, which RR had said he could not do and to comply with an ongoing programme of monitoring.
RR had previously expressed the wish to have a second transplant, but on discussion with the court-appointed psychiatrist, appeared to consider that there were no options available for him, and he said that he could not cope with a further period of inpatient treatment. His father and girlfriend wished him to have a bone marrow transplant. RR died 48 hours after the court hearing.
It must be assumed from the fact that the Trust issued these proceedings in the Court of Protection, that the doctors were willing to attempt a second bone marrow transplant despite the risks and the very low prospects of success. In those circumstances, and given RR’s previous wish to receive such treatment against the views of the treating doctors, it is not surprising that proceedings were brought. This is precisely the scenario encompassed by the Supreme Court’s edict in NHS Trust v Y  UKSC 46 that life-sustaining treatment decisions (including best interests decisions not to treat) require the sanction of the court if at the end of the process of decision-making, “the way forward is finely balanced, or there is a difference of medical opinion, or a lack of agreement to a proposed course of action from those with an interest in the patient’s welfare” – which must, self-evidently, include from the person themselves, either at the time, or at the point when they had capacity to make the relevant decision.
The judgment also illustrates the difficulty of assessing capacity in people who have diagnoses such as autism and personality disorder, and where queries about their capacity are only raised in the context of a treatment dispute with clinicians. Whether or not RR lacked capacity at the time of the court hearing, however, it seems the outcome would have been the same, as RR was too ill to undergo further treatment and was not willing to agree to a long admission to hospital.